barefut

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Blog Entries posted by barefut

  1. barefut
    If you dream about exercise, does that count? I woke up this morning thinking I was all firm and fit and healthy. What a rude awakening! Then I noticed the headache. And its raining. Silver lining: It's not snowing!
     
    My cat is trying to pet himself with the vacuum cleaner. My youngest is staring at me. "Why don't you pet your poor cat?"
     
    "Nope, I'm busy."
     
    Big One streaks through the house looking for clothes. He can't find any because they are all folded up in his dresser drawers.
     
    Little One discovers my grandpa's harmonicas. Yay. Could be worse; grandpa could have played drums.
    Cat sings along - or is he telling him to stop it? OOPS! He's telling him to stop it.
     
    Big one says, "What do you play if you can't play an instrument? Drums."
     
    Okay, so I actually went to an online match making service last night and filled out a questionnaire. With every group of questions I found myself criticizing the survey: "They just asked me the same thing in slightly different words in the last group of questions! How did I answer that one?" By the time I was done they said I was schizophrenic. Don't tell anybody.
     
    Silver lining turned to lead: It's snowing.
     
    45 minutes later -- It's a whiteout with the most gigantic flakes I have ever seen! How can something so beautiful be so much of a pain?! There'd better be school tomorrow - I'm going to work if I have to harness up the neighborhood dogs and mush into town.
  2. barefut
    If I had a magic wand I'd tap all the grumpy, uncaring, irresponsible, argumentative, disagreeable, negative people in the world and make them wear rose colored glasses. I have got to say that it boggles me how some people have made this their way of life. Might need a magic bat.
     
    My son and I were crossing a parking lot in a cross walk when a car failed to stop and skidded on the wet pavement. (You might be thinking this is going to be about the driver - nope) I'm sure the driver saw us but expected us to stop for him. Since we were already 3 steps into the the crosswalk, we continued walking expecting the driver to stop for us. After the close call, I looked back and realized that the white lines on the pavement were so worn away they were barely visible. Being that we live in a tourist town, I figured the driver might not be from around here and therefore not aware that there was a crosswalk there.
     
    Once inside the store, I met a clerk and told her of our close call and politely asked if she might pass along to management that it is time to re paint the lines in the parking lot. I guess that responsibility was too much for her and she told me to talk to somebody else. 'Luckily' the store manager happened to be walking by so she flagged him down. Once again, I explained our close call and mentioned that for safety's sake, its probably time to have the lines re painted in the parking lot.
     
    I was floored when the manager became defensive, (as if he were the driver!) and tried to argue with me about there being a crosswalk in the parking lot and beckoned me to come outside with him and show him where this incident took place. Giving him the benefit of the doubt, I figured he must not be from around here, and can't see the lines either. When he saw where I was talking about, all he had to say was, "Well, the parking lot is not our responsibility, it's the building owner's."
     
    It would have been easier for me to go buy paint and a brush and paint the lines on the pavement myself! What is wrong with people? If I was that clerk and someone told me that story and asked me to pass along a safety hazard to management I would have said, "Oh my goodness, I am sorry that happened to you. What a scary thing. I will definitely let the let my manager know." If I was the manager and I heard that story and even if I didn't know there was a crosswalk in the parking lot, I would have said the same thing, and if I felt the need to defend the store from some kind of liability, I would have simply said, "I will let the building owner know."
     
    There went fifteen minutes of wasted time I'll never get back.
  3. barefut
    In reading Barb's blog, Green Fingers, I find myself suddenly experiencing greenhouse envy in sort of an "Ah Ha!" way. Greenhouse! Of course! I've got to get me one of those! Why, all these years, it has never occured to me that I could have one of those too? I do not know. Ten years ago, I started some flower seeds in the living room window, too poor to afford to buy plants. I loved the process but it was quite a pain not having the proper space or place to do the job. I ruined the woodwork on the window sill and I have never started seeds indoors since.
     
    Barb's description of a Raynaud's free environment to "potter around" in sounds like a retreat for the soul. How I would love to spend hours babying little seeds into something beautiful for my yard or something healthy to eat. I can feel the warmth and smell the soil already.
     
    So, why not a greenhouse for me? Where there's a will there's a way. (Or where there's a dad there's a way... :rolleyes: ) So dad, I guess you know what your next project will be on your next visit, as if you haven't already done enough for me! But you knew I couldn't let you get away without putting you to work on some kind of summer project right? ;)
  4. barefut
    There goes the cork! I feel lousy. No, lousy would feel good. On the lousy scale of 1 - 10, I'm at about a 20. On top of the normal everyday lousy, I have been trying to hack up a lung for 2 weeks all the while trying to keep from peeing my pants with every cough. I also think my head might explode. After staying home with the boys for a week when they had the crud, now I have to continue on to work with my crud. I'm sure my fellow employees appreciate that. Oh, and it's that time of the month. That time of the month always has perfect timing.
     
    As sclerodermians, or fibromyalgians or any kind of chronic pain sufferers, think for a minute about how much constant pain and discomfort we ignore every minute of every day. Once in awhile, in a quiet moment I will close my eyes and take inventory of what hurts and I have to laugh. Because, what a joke! Really. And it's either laugh or cry and crying never really does much good.
     
    And then there are the body parts that, if not actually painful, they just refuse to function. Take my brain for example. As I mentioned before, part of my job as a personal banker is to remember people's names, and use them. Thus the term personal banker. I have a couple of problems with that. First of all, I have to remember a face. Then I have to remember a name and match it to the face. It doesn't do any good to remember names if I'm not using the right name with the right face. If only I could just call everyone sweetie or honey or pumpkin. I think that might be frowned upon in personal banking.
     
    Well, I'll put the cork back in it and spare you my inventory of pain and go for another dose of cold medicine. I have to get ready for work in about 3 hours maybe I can catch a few zzzz's before then.
  5. barefut
    There once were two bloggers with colds in their heads
    People kept telling them that they should be in bed
    "Whatever will my family do then?" they said
    Whatever will your family do when you're dead?
     
    For that's surely their fate if they kept running 'round
    They were driving themselves right into the ground
    That is not where their families want them to be found!
    They need those bloggers with a body that's sound
     
    So off to bed they did go that day
    And in their beds they loved to stay
    What bliss it was for them to lay
    And have things brought to them on tray
     
    Their families worked just like a team
    They even cleaned the carpets with steam
    And brought their sick bloggers warm cocoa with cream
    POOF! It was only just a dream
  6. barefut
    Wow, would you look at that -- I am a blogger. A blogger for the International Scleroderma Network! (International!) My blog even has its very own (witty-ish) title and everything -- I think I might capitalize Blogger.
     
    One might even go so far as to say that, I am a 'writer'. I write; therefore I am a writer. That is bold for me to say. I have always felt inhibited from actually referring to myself as'a writer. That term is reserved for published people who make a living from their work. People who have struggled for years, emotionally and financially, to earn that title. People who have gone to school to learn the finer art of writing and/or who have spent countless hours working to become published in addition to the countless hours of writing and/or agonizing over what to write about.
     
    But tonight, with my glass of red wine warming my sore throat, I am uninhibited enough to say that, "I am a writer." That feels kinda cool. I couldn't pretend to be a writer without the privilege of being a Blogger for the International Scleroderma Network! (International - that's world-wide!) And I couldn't be a Blogger without the blessing of Shelley Ensz and the wisdom and support of my editor and mentor Carrie (Jefa) Maddoux. (That's cool - I have an editor -- I must be a writer!)
     
    Without knowing it, Jefa has taught me a lot about writing and even more about myself. She has given me one of the greatest personal gifts I could ever ask for -- confidence. And without ever having met her in person, I can feel her confidence in me. She has made me think. Hard. About a lot of things. Carrie is on the top of my list of cyberfriends I would really love to meet in person, if only to give her a big hug and say thank you. Thank you for your confidence in me and thank you for giving me confidence in myself.
     
    Thank you, Carrie.
    You will always be in my heart.
  7. barefut
    Okay ladies, thanks for the belly laughs! No thanks for making me wet my pants. Dented bosoms and parking lot face plants?! The visuals you two have stirred up in my imagination will have me laughing for days. Bless you both for that. How I would love to share an evening and a bottle of wine with you two!
     
    I have nothing to blog now. I just want to bask in the afterglow of endorphins and massage my cheeks back to their former selves. Oh, and change my pants.
  8. barefut
    Two sick kids again. ARGH! Can we ever get healthy? This past weekend Big One complained of a sore throat, headache, stiff neck, aching back, had a temp of 102.5 and was hunched over a bowl in anticipation of vomiting. Somewhere in the far reaches of my memory, those particular symptoms rang a bell. Something I read.....meningitis? A quick web search said yep, get him to the doctor. A visit to the Express Care at the hospital confirmed strep throat. Antibiotics on the menu and I am to keep a close eye on him for the M word. Thankfully, he feels much better today. Luckily Little One's earache is not an infection and is probably just allergy related. The pollen is really bad right now and his poor little eyes and nose are driving him crazy.
     
    So, off to school they go Monday morning. 2:00pm I get a call from school, Little One has a tummy ache and has been sleeping in the nurse's office. I have missed so much work due to our illnesses, I have gotten a verbal warning. I called my precious friend/babysitter/neighbor who is battling some serious health issues of her own and isn't even supposed to be around any kind of possible infection. The school nurse said he didn't have a fever. My friend agreed to pick him up for me and take him home with her.
     
    She tucked him in with blankies, gingerale and movies and he again fell asleep. About 45 minutes before I was able to pick him up, he woke up with a fever and vomited. Poor kid. My poor friend, too! Now I am sick with worry about her catching this 'whatever it is' bug. Little Ones bounce back. An infection could be life threatening for my friend. Now I will keep an eye on her too. Well, thankfully I was scheduled for my day off tomorrow so I can stay home and play nurse and hope I don't get this latest crud.
     
    I have had one day off in the last 12. Yea, 2 of those were Saturdays and I was off at 1:30 but nevertheless, it wasn't a day off. Then I totally forgot the 8:00am staff meeting this morning! I have never forgotten a meeting! I am always the first one there! I may joke but I am seriously worried about my memory. I know employee evaluations are coming up soon, so I couldn't have better timing to start messing up at work. I am lucky to have a job.
     
    Oh and my clothes washing machine broke. I have been anticipating that one. I wish it could have waited for me to have some clean clothes in the house. Nope. Everything we own is dirty. Now I get to spend $3.00/load at the laundromat, one load at a time, on my lunch hours. My refrigerator is next to go. Instead of getting to spend my tax return on a hot tub, or invest it or save it, I will be buying new appliances with it. Joy. But, I am grateful to have a tax return.
     
    Some good news! When I got home from work today, another of my precious neighbors had mowed my lawn! Front, back and side. I can't tell you what a relief it was to see it all done. He also pulled some weeds in my front flower weed beds. I am blessed to have such great neighbors.
  9. barefut
    Today Little One woke up at 5:00am hungry but couldn't do much with his oatmeal yet. His fever is gone! And it's raining! Never thought I'd be glad to see the rain but if it washes some of the pollen out of the air for awhile, I'll take it. I woke up myself the other day with a swollen face and bloodshot eyes. Speaking of waking up, I have discovered that if I take 800mg ibuprofen at night, I wake up much better. I am down to 4mg prednisone, so up goes the ibuprofen.
     
    So, what to do today, if Little One (and my wallet) is up to it, I guess I'd better hit the laundromat. And check the mail for my tax return. Maybe get some food in the house. I hate grocery shopping. Yes, hate. Strong word but that's how I feel. I wish food would replenish itself.
     
    I remember a time when I actually looked forward to grocery shopping. Big One was little and not only was I a stay-at-home mom, I was an isolated, no friends mom. Grocery shopping was like going to a party. I actually planned menus, made lists and comparison shopped. Being around people was comforting even if they were strangers. If I was lucky, I'd run into someone I knew and get to talk their ear off about everything.
     
    How things change! Now, being around people is starting to wear on my nerves. My solitude is precious. I'm lucky if I can get in and out of the grocery store without seeing anyone I know. I can't remember anything long enough to put it on a list, planning menus takes place in the frozen dinners aisle, and comparison shopping is limited to 'which store can I get in and out of quickest?'
     
    Well, feels like one of my pills got stuck today, better go see if I can make it go down before my esophagus burns up.
  10. barefut
    Well, okay there's nothing (seriously) wrong with my brain and I have the MRI, and vascular studies to prove it now. So why the vertigo, dizziness, sudden extreme sleepiness and memory and concentration problems? And what was up with that throbbing pulsation in my neck and the pricklies in my left arm last Tuesday at work which sent me to a Seattle hospital for more testing all day Wednesday when I really wanted to be at my friend's Celebration of Life service? (How's that for a run-on sentence?)
     
    I may never know the answer to that but at least I know that I'm not a ticking time bomb of embolisms ready to stroke out at any given minute. Whew! I really do have enough on my plate for now, thank you.
     
    So, what was it like to travel to Seattle in an ambulance with no bridge? It was AWESOME! Well okay I exaggerate, but it was as awesome as it could be under the circumstances. I have to thank everyone involved in all the prior planning that it took in order for my transport to go so smoothly. It was like they had been doing it this way for years.
     
    I left my local hospital in style -- lights, sirens and all. We arrived at the passenger water shuttle in no time. I was wheeled past a crowd of onlookers with very serious looks on their faces. I wanted to make them all laugh but my usual witty humor escaped into a thick brain fog. Suddenly very self-conscious, I tried to rearrange the blanket to cover my bare shoulders.
     
    Once on board, I had my own private corner of the boat with a curtain all around and a flat screen TV. I can't say that it was luxurious but I can say that it was as comfortable as it could be under the circumstances. In looking around I noticed all the modifications made to the boat in order to accommodate me. They did a great job.
     
    Thankfully it was smooth sailing and once on the other side, I was the last one off. Another transport was waiting for me there and then we were off to the big ferry. I inquired as to how I was to get back home and the EMT's informed me that there is a free hospital to hospital shuttle service for patients. Cool. I didn't end up using it but nice to know it's there.
     
    I must apologize to friends and family for the scare. And thank them all for being there. The ER doctor didn't want to alarm but had to send me to avoid possible harm. Nothing serious is nice to find and gives me precious peace of mind.
     
    Now I get to schedule a sleep study....
  11. barefut
    I hate people games. If you wanted to torture me, just make me watch any one of the reality TV shows that are so popular these days. What a monumental waste of time and energy and life itself to participate in and perpetuate trivial, foolish, petty, insolent, tattling, back stabbing, behavior which results in everybody's emotional angst. It is scary to me that this has become entertainment. Don't people get enough of this stuff in their own personal everyday lives? Does it make people feel better to see others suffer along too? I start to wonder...
     
    I have always wondered about people. This may be why I was drawn to sociology in college. Sociology is the study of human social behavior. It would serve us all well to study a little human social behavior. Maybe that's what these shows are really all about? Everyone involved is actually part of a sociological experiment. I can see a room full of sociologists placing bets and laughing their heads off behind a 2 way mirror. I am reminded of the two old guys in the balcony criticizing the show during the TV series The Muppet Show. That's me. I think that's what these reality shows need - 2 old guys in the balcony criticizing the show. Now that would be entertaining! Now watch someone steal my idea and make a jillion dollars from it. Remember, you heard it first here folks!
     
    I have never been one to jump on the band wagon no matter what was playing. In fact, I have always kind of enjoyed doing the opposite of the status quo. In high school when everyone else was wearing purple nail polish and mini skirts, I enjoyed wearing my flannel shirts and overalls. My own form of rebellion? Maybe. To this day, I find that I tend to behave in the opposite manner of what is normally expected of someone in a given situation. Examples? Let's see... when someone does something to me that would make most people angry, I laugh. Probably more for reasons of self-preservation in this instance than of rebellion because I have had more than my share of "angry" for one lifetime. In order for me to be able to do this, I have had to train myself to get past the knee-jerk, reactive, emotional response and consider the antagonistic source. How would I do in one of these reality shows? I would probably get beat up for not playing the game right.
  12. barefut
    Came home tonight after the season ending baseball jamboree to news that our dear sweet friend is in the hospital fighting another infection and fighting for her life again. She has become part of our family this past year, caring for the boys, playing referee, chauffeur, chef, pet sitter, helping with homework, hurt feelings, little one's dramatic sports 'injuries' and generally being mom when I could not be there.
     
    I am sick with worry and feeling a bit responsible for her condition since my boys have been sick with fevers and croup. I should have not let her near little one after big one was sick. Of course he was carrying the crud, contagious after being around his brother and then got the fever about the same time she started feeling unwell. Oh, I feel so responsible! I spoke to her the day she went into the hospital and she said she was stabilized and felt better and was hoping to come home today. I told her I thought she got sick from my boys. She told me not to worry and said that if she did, she would never enter a grocery store. I felt better for only a second. Now instead of coming home today, her family was called to her side.
     
    My dear, dear, sweet, precious, kind hearted friend, please come home to us. We aren't done spending time with you yet. You must come over and let me cook for you like you cooked for me and the boys. We have to go to the drive in this summer and walk the beach with the dogs. You must let me be there for you like you have been there for us. So, we will see you home soon dear friend because we are not done.
  13. barefut
    Dear Friend ~
     
    I forget that you're fragile
    Cuz you're just so tough
    Fearlessly taking on my boys
    Proves you've got the right stuff
     
    Now use that stuff right
    To get yourself well
    Cuz I know hospitals
    Can be, uh, less than perfect.
     
    The nurses (bless them) wake you every hour
    And all you want is to take a shower
    The food 'aint good and TV is bad
    The boredom and restlessness can drive you mad
     
    So enjoy this small care package
    To help pass the time
    And accept my apologies
    For this terrible rhyme
     
    And know we are thinking of you everyday
    Sending strength and best wishes
    For a SHORT hospital stay!
     
    *************************************************************
     
    My dear sweet friend has made a remarkable recovery and hopes to come home Friday!!!
  14. barefut
    My Crete is a lake an hour and a half's drive from here. Just got back from 3 blissful sunny days and 2 sleep filled nights in 'my' time share cabin on the lake -- well it's sort of mine, although I have to share it with the rest of the world. Except instead of paying a big chunk of change for ownership or a monthly fee or mortgage, I just reserve it for whenever it's available and only pay for the nights that I stay there. I have a staff that keeps it clean and well maintained so it's all ready for me when it's my turn to stay. National Parks rock!
     
    I feel good. Rejuvenated. Pain free! I could live in that little cabin on the water everyday for the rest of my life and be completely content. I don't need anything else. No TV, no phone, no computer, no cars. I'd even trade in chocolate.
     
    Now it's back to reality. Back to the rest of the summer -- just working. That's it for my vacation. But you can bet that I will be spending as many sunny Sundays up there as I can squeeze in.
  15. barefut
    Wow. This sleepless near Seattle thing is getting old. Today will be fun at work - and THE boss will be there all day - quizzing us. Boy I can't wait for the sleep deprivation hangover to start. The thick headed, brain fog and headache, the burning, swollen, bloodshot eyes, bumping into walls and spilling my coffee, the extra loud ringing in my ears, dizziness and nausea, the looking like a ditzy idiot to everyone. Oh! And evaluations are this week too. Yessiree, can't wait for all that fun to begin.
     
    So, anybody have a secret remedy for restless legs? I am about ready to try a sledge hammer. Kidding of course!!! Had a totally sleepless night last week and had to leave work early to go take a nap. It was too dangerous for me to even try to drive home so I tried sleeping in the car but those legs started up again so I went straight to my doctor's office. He didn't want to treat until after my sleep study. He modified the study protocol to include my legs. I have only mentioned my RLS to my rheumatologist once and back then it wasn't so bad. Wonder why it's getting more often and more severe? Sometimes I'll take a pain reliever (PM kind) or two and that helps me to sleep better but then I can't snap out of it the morning. There's got to be a happy solution.
     
    Went online shopping for a new mattress tonight (this morning!) I have an inexpensive memory foam but when I do fall asleep, I wake up with my hips, shoulders and elbows in agony and I can hardly move. I am going to try a 5" topper of good old fashioned foam. I sleep better on my couch (when it wasn't sagging). I have been done with prednisone for over a month. It ought to be something to celebrate. Who feels like celebrating when you can't move? Again, there's got to be a happy solution!
     
    I had my sleep study consult last Friday. The ARNP seems pretty convinced that I have apnea just based on my symptoms. My first slumber party is in a month. I fantasize that a C-pap machine will miraculously solve all my ailments. If it does, I'll buy stock and go on the road selling door to door.
     
    Well, it's time for my 3:45am nap.
  16. barefut
    Home with a sick kid today, fever, vomiting - hope it's not piggy flu!  Just got a call from my boss that they received the revised FMLA paperwork from my rheumatologist supporting my request for reduced work hours.  I never saw a copy of what my doctor wrote but the letter from my employer said 4 - 6 hours a day 5 days/week.  I was told not to come in on Monday until 2:30pm (weird) and I would get my revised work schedule then.
     
    I'm kind of dreading that because I asked for 8:30 - 3:30, and my boss and coworkers were not happy about that. I know my hours will probably be something like 12:00pm to 6:15pm, defeating the whole purpose of asking for reduced hours in the first place - so I could get home before 7:00pm, prepare dinner for my kids, help with homework and get them to bed at a decent hour, not to mention eliminate the whole childcare problem of no facilities being open after 6:00pm.  It's not like I am asking for time off early so I can hit the tavern for happy hour (no matter how good that sounds some days).
     
    Man it seems like nobody has a heart, or it's like, "Well I don't get any breaks so neither should you."  I'm broaching on a whole 'nother blog right now so I'd better save it.
     
    I will keep y'all posted on what my new work schedule will be.....
    I feel like I've won the battle but will ultimately lose the war.
  17. barefut
    So much going on
    And big stuff too
    Don't know where to begin
    Don't know what to do
     
    Ready for changes
    Something's gotta give
    Walking these edges
    Is no way to live
     
    My head is aching,
    No, splitting in two
    What have I done?
    What can I do?
     
    How can I know
    If my decisions are good?
    How can I make
    Myself understood?
     
    A peek to the future
    Would be so kind
    Is it too much to ask
    For some peace of mind?
  18. barefut
    In spring I used to plant a vegetable garden, and sweet peas and a pumpkin patch.
     
    In summer I used to mow along the road and keep the blackberry bushes at bay and water my grass and flowers.
     
    In fall I used to put away the patio chair cushions and hammock and prune my rose bush and rake the leaves.
     
    In winter I used to feed the birds and watch them from my kitchen window, and decorate for the holiday with colorful lights and bake cookies from scratch.
  19. barefut
    This one gives me temporary pain free mobility and a bit of endurance but also irritability, sleepless nights and weight gain, not to mention silent other evils.
     
    That one helps keep my fingers and toes from falling off but gives me dizziness, nausea and low blood pressure.
     
    This one keeps me from digesting my esophagus but may be the culprit of my irritable bowel.
     
    That one helps keep my body from attacking itself in countless ways but may also be the irritable bowel bandit.
     
    This one actually does a good job on the pain and counteracts the irritable bowel - but in the way of constipation.
     
    And the new one on its way is also supposed to keep my body from attacking itself but takes a month or two to kick in and may come with nausea and a host of other annoyances.
     
    And this pretty one is supposed to help me to endure it all with a smile on my face but may actually do the opposite.
  20. barefut
    Listening to my 7 year old sing in the shower.
     
    A good cup of coffee.
     
    Snuggling on the couch with my boys.
     
    Sunrise.
     
    The sight of my 12 year old and his dog, snuggling and fast asleep on the living room floor.
     
    A clean house.
     
    Cooking, coloring or puzzles with my boys.
     
    My mountains.
     
    Sitting in my recliner at the end of the day and looking at my boys' school work and art work.
     
    Good hair days.
     
    My Lake.
     
    Getting into the car in the morning after I cleaned it the day before.
     
    My boys getting along.
     
    Summer road trips.
     
    My beach.
     
    Family, Friends and Food.
  21. barefut
    Well I've been on Azathioprine (Imuran) for at least 2 months and I have noticed a slight improvement in my muscle pain and stiffness, although I am still weaning off of the prednisone (again) only this time more s l o w l y! I am at 4mg as of now.
     
    I enjoy being able to stay at home and take proper care of myself and my boys. I have been eating better, napping and going for short walks. I have even spent some time pulling weeds! I want to start swimming and join a yoga class.
     
    I am receiving Temporary Assistance to Needy Families (cash) which pays the mortgage. And food stamps which feeds us well. I also have assistance with my utilities. Still no child support. I have applied for long term disability insurance through my former employer and, if you read my latest post, feel like I flunked my recent telephone interview with regard to this.
     
    Then my sister reminded me about my trip to Swedish Medical Center last May. I went to the ER with some symptoms of transient ischemic attacks (TIA's) and was sent to Swedish for a neurological work up. I passed. And so then was referred for a sleep study where it was found that I do have sleep apnea but only when sleeping on my back, so not bad enough to have to have a C-Pap (glad!). All of this to figure out why I am having memory and concentration problems. I forgot about this and so did not give the insurance company these medical records. So maybe I'll have a leg to stand on after all? But only one, and only if it's not too late.
     
    Disability income or not, I am hoping to feel good enough this fall to reopen my preschool. I had so much fun with that and I miss those preschoolers a lot! I would hold classes Monday, Wednesday and Fridays from 9am until 1pm and take only 4 - 6 kids. Surely my body would let me do that by this fall?
  22. barefut
    Wah Wah Wah. Even I get tired of hearing myself complain. Not that that's all I do or anything, just that if there's one thing I am more weary of than my daily ailments, it's hearing myself whine about it. Nobody wants to hear it, and it really does not make me feel better so what's the purpose and the point?
     
    I suppose it's just a bad habit now. Not to mention a knee jerk reaction to any kind of pain: "OWWW my aching legs! OHHH my feet are killing me! OWWW my right shoulder!.....I sound like I'm 95 years old. In fact, my 95 year old grandmother complains less and she's now in a nursing home and entitled to complain!
     
    SUCK IT UP! My other voice says. You have been through the wringer and are tough as nails, otherwise you wouldn't even be here. I hear my boys' coaches telling their players to "suck it up" and "walk it off". I think I need a coach. Someone to help me get out of bed in the morning. Actually it may take more than a coach. It may take a drill sergeant.
  23. barefut
    Oh where oh where has my little Barb gone?
    Oh where oh where could she be?
     
    With her sharp wit and humor and even poems too
    Oh where oh where could she be...?
     
    Missing you Barbara Lowe! As you can see, we need your poems and stories of life on the farm and in the radio booth. Nobody wants to hear me try to make a rhyme!
     
    Wishing you all the best and hoping all is well with you and yours!
     
    (You can hear Barb on the radio from the UK at www.chorley.fm "The Morning Show with Babs" begins at 9am UK time) ~ Love ya lady!
  24. barefut
    Every time I pull into my driveway and see the over grown weeds, the lawn that needs mowing and all the unfinished chores and projects, I wonder what others think when they come over to drop off their kid or to pick up mine. I wonder what my neighbors think. What do strangers think? "Boy, there's a house that needs painting, a yard that needs mowing..."
     
    Then I think, what does it matter? It only matters if it matters to me. I certainly care more about what I think than what others think. So I have to decide if it is worth the physical, mental and emotional effort to step up the maintenance and consider what would be neglected if I did because I can't do it all.
     
    I also have to consider whether or not it is physically, mentally and emotionally economical to let caring about it take up space in my head. I am constantly reassessing what to allow myself to care about. What is really important? What/where should my priorities be? The limitations this disease puts on me makes those decisions much harder than if I were healthy. Not that I could do it all alone if I were healthy either but I could certainly do a lot more!
     
    Having to be an example to my kids also makes these decisions harder. What do I want them to see? How do I want them to be? What matters? Does it matter if it looks like we live in an abandoned house? (I exaggerate, but not much) Does it matter if everything around here is falling into disrepair? Does it matter if our whole house is always messy?
     
    What matters to me is my choice. What matters to my kids is also their choice but they are still in the process of learning from me. That's a lot of pressure. Most days I cannot lead by example and it is pretty lame to say, "If I felt better the house/yard/whatever would not look like this - I need your help boys" No, they are watching me and absorbing my habits like little sponges. What standards they grow up with will be the standards they carry as adults.
     
    I grew up in a neat, clean house with beautiful landscaping. My parents let us keep our bedrooms how we wanted - if they were messy we had to keep the door closed but the rest of the house had to always be presentable as if company were coming. And this is how my home and yard were always kept until scleroderma came knocking.
     
    These days most of the house keeping takes place in my head; whether I am wishing the dishes clean or organizing my thoughts and throwing out the ones that don't matter.
  25. barefut
    7 years ago yesterday I heard my doctor say "diffuse systemic scleroderma" to me over the phone. It was the same day my friend and neighbor heard his cancer diagnosis. I am thankful beyond words to still be here and call myself a survivor because my friend did not make it. He fought hard for nearly 3 years and left behind a 13 year old son, my son's best friend.
     
    I always take this time of year to reflect back on everything I have been though with this disease and then count my blessings for having been able to come through it. To be able to continue to be mom to my boys is - well there is no greater gift.
     
    And I remember all of those precious fighting spirits that we have lost to scleroderma. All amazing people who suffered more than anyone should have to with any disease. All of whom were always there encouraging others and always seemed to be smiling though they themselves had it so hard. When I think of what they fought through I am ashamed of myself for complaining even one little bit.
     
    It is from them that I draw my strength and perseverance every day. I feel like I owe it to them to take the best possible care of myself and my boys - because I am still here. I am one of the lucky ones. Scleroderma has been kind to me in that it's onset and progression has been slow. I have been blessed with time. Time to learn, and love and laugh. Time to grow spiritually, emotionally and creatively. Time to just be all that I am, warts and all and to share the precious time that I have been given with my boys and my family, friends and community. And for that time I am thankful beyond words.